"Our control on the outer world is limited, temporary and often illusory."
Dr. Robin McGee, a registered clinical psychologist in Nova Scotia, Canada, recounts her powerful story of 2 years of diagnostic bungling and neglect and her heroic survival in her book The Cancer Olympics.
Robin, can you provide an overview of your book “The Cancer Olympics” as a memoir and also as a community narrative on using social media as an advocacy tool?
The Cancer Olympics tells my terrifying story as if it is unfolding in real time. It is written in the first person present tense (“I am holding a picture of my tumour”).
It begins with the horrifying revelation that I had been egregiously neglected by the four doctors I saw in pursuit of the reason from my rectal bleeding. Diagnostic endoscopy which should have occurred in 60 days, took 661 days.
A fit person in my 40s, I am staggered to learn I have 3C rectal cancer and a very grim prognosis. Using the actual blog posts and email responses between myself and my online community, the memoir follows me through harsh treatments while showing the warmth, humor, and support of many voices.
When it is time for my post-surgical chemo, I am stunned to learn that my province of Nova Scotia does not have the best-practice chemotherapy for my stage of cancer. My community and I launch into advocacy with the government in a fight that goes all the way to the Minister of Health, with the actual letters and email correspondence shown as the suspenseful scenario unfolds. Our social media advocacy campaign is successful; but sadly, too late for me. I never receive the chemotherapy which would have given me that best chance at cure.
The memoir also relates my search for justice for my delayed diagnosis via the College of Physicians and Surgeons. Ultimately, three of the four doctors on my diagnostic pathway are disciplined for their conduct in my case. So The Cancer Olympics is a very human story about survival, advocacy, friendship and justice, as well as about how social media can create change in a democracy.
As a patient advocate involved in the development of standards of care for colorectal cancer in Nova Scotia, what do you see as the future of healthcare in the bigger picture?
The most significant issue in the future of healthcare is patient engagement. Patient participation in organizational decision-making – on Health Boards and Councils, on working groups, on advisory committees – it is the way of the future. In the words of The Borg from Star Trek: resistance is futile. All healthcare, at all levels, must welcome patient representation, leadership, and collaboration.
We patients have so much to teach, and we healthcare providers have so much to learn! We have a very long way to go before the patient voice will be truly heard, but we must start now if care is to become safe, responsive, and respectful.
You said in your blog that you were not prepared for the reactions from your readers on your book. Can you elaborate on this?
There are three reactions I typically receive from readers. Many people respond warmly to the notion of a grassroots movement comprised of ordinary citizens who bring about better healthcare and fair drug policy. They reach out to me to thank me for making the world safer for them and their loved ones. Also, I hear from those who find solace in the many voices of my supporters – people who are supporting the ill, or going through a tough time in their relationships or their work. They email to say how the book gives them comfort and courage.
But by far the most striking and indeed the most heartbreaking of my respondents are those who have undergone medical error. I receive dozens of such messages. One of the most poignant was a 10-page handwritten letter from a woman whose son died of colorectal cancer at 41. He too had been brushed off by many doctors. She poured out her story, her struggle to cope, her profound grief…I could see her tear stains on the pages. I promised her as I promise all – that I will continue to advocate on behalf of patients for better and safer care for as long a time as I am given.
Can you talk about your new coined social experience called “tweetreading”?
I recently had the delightful experience of having a reader of my book – Dr. James Legan, a specialist in internal medicine – tweet me throughout as he read the book (“I am on page 60 and I cannot put it down!”). He tweeted me impressions, questions, and insights, to which I responded immediately via Twitter.
Afterwards we commented it was so fun for a reader to correspond in real time, and fun for the writer as well. We called our experience “Tweetreading.” We both blogged about it, and the term got picked up in the Twittersphere and even found its way into online publishing journals.
As a powerful sequel to this experience, Dr. Legan used The Cancer Olympics as a case history that he presented at a major medical conference shortly afterwards. I was so honored to think that my book could reach not just patients, but doctors too.
What advice can you provide for people who run into medical care obstacles like you did?
Compliance and competence in all walks of life, mine included, is governed by the “80/15/5” model of behavior. Doctors are no exception. Most doctors are conscientious, hard-working, decent clinicians: 80% of them do their job well. These are the “green zone” doctors. But about 15% of doctors mean to do well, but don’t. They are impaired, distracted, addicted, or have some other issue which lessens their ability to do the right thing. These are the “yellow zone” doctors. And sadly, 5% of doctors are rogues who do not follow the rules, who in fact defy guidelines and expectations. These are the “red zone” doctors. So patients should be aware that 20% of doctors are prone to error, sometimes very significant error. They are only human.
Experiences like mine teach prospective patients that one must be relentlessly vigilant about one’s own medical care. Be the squeaky wheel. Research shows that as many as 30% of medical referrals are lost in transit. Did your referral get sent? Was it received?
Follow up every test and referral yourself. Better yet – find a doctor who is transparent enough to make assessment of your care easy for you. Dr. Legan projects his Electronic Medical Record during office visits so that patients can co-create their records with him. He has a patient portal that allows patients to check their results and records.
As he taught his audience at the conference, had his simple yet brilliant system for patient engagement been in place during my search for adequate medical care, my horrible outcome could have been avoided.
cancer support programs are maximized by buying it through the FriesenPress Bookstore.
Whether it’s Day 1 or Day 1001 of your cancer experience, it’s time to take charge of your health!
Join a community of like minded people as we craft healthy, anti-cancer lives.
We have weekly discussions with the movers, shakers, and experts on #AllThingsCancer:
A monthly #CancerBookClub where we explore the cancer experience through literature:
© Copyright 2018. All rights reserved.